Metabolic Support UK has recently taken on the role of Chair of the UK Patient Advocates for Newborn Screening Group (PANS), which is a working group of a number of patient organisations – supported by scientists, clinicians and other health professionals – all with an interest in the extension of the UK newborn screening programme for all appropriate inherited disorders.

The group works to:

Raise awareness of the importance of newborn screening in detecting rare conditions at the earliest opportunity.

Identify and agree on diseases that can meet the criteria for submission to the UK National Screening Committee.

Advise and supports all patient organisations in submitting their proposals.

Study newborn screening developments in other countries, developments in research and new treatments.

Identify key challenges and issues which are preventing new disorders being accepted onto the programme and make recommendations to the relevant Government departments.

Newborn screening is a key part in the implementation of the UK Strategy for Rare Diseases.